Hi, I’ve recently been diagnosed with PD and looking for ways to help. I came across a video promoting a publication by Jodi Knapp that suggests there are 12 things someone with Parkinson’s can do to slow down the progression of the disease. I had a look at some of the reviews but none convinced me to part with my money to find out if it may be a scam, so I thought I’d ask if anyone here has experience of such publications or has a routine that may be helpful?
Hi Laura, and welcome to our friendly forum community. I just wanted to say hi and to let you know that we have a lot of very helpful information on our website at Parkinsons.org.uk including daily activities and research news. You can also call us at 0808 800 0303 for free and confidential one-on-one support.
I’m sure other members will jump in to welcome you, and hopefully answer your question. Meanwhile, I’d encourage you to look around and see what you discover.
Best wishes,
Zofia
Forum moderator
Hi Laura, welcome here. I’m not familiar with her work but a quick search revealed that Jodi seems to have a cure for MS as well as for PD. I think it’s safe to assume she’s cashing in on our illnesses.
I’m trained in research (though my background is not neurology or PD) but I have a sense of what to look for. My understanding is that the overall most effective way of slowing progression is exercise.
Maybe I’m wrong about that, if so I’m happy to be corrected. In any case there are many excellent free resources available online: Youtube has lots of PD exercise videos, and of course there is good material on this website and on the USA Parkinson’s site too.
I realise exercise isn’t possible for everyone, and apologise for going on about it if you’re one of those people. But if you can do it, I recommend it.
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I take magnesium l-threonate capsules as I find an improvement with muscle stiffness in my leg. I believe there is a thread here somewhere about it.
It’s under magnesium glycinate
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Hello Laura2093 and welcome to the forum. It is well documented that alongside any medication you may be on the other single best thing you can do to help slow the progression of the Parkinsons is exercise. Any exercise or sport is better than none but ideally it needs to be quite intensive. This may not be as easy as first appears. I now have a well established exercise routine but was not easy to reach this point. I posted my experience here on the forum
This is the link if you want to read it. On my ‘travels’ I came across power for Parkinson’s and in particular one of their trainers, Lauren Lewis, although they are all good. They are based in Austen, Texas so are very american and they have videos on just about any aspect of Parkinson’s you care to mention. Their videos are the only ones I go back to and enjoy - most videos spend a lot of time talking not much doing and tend to bore me to tears. The Power for Parkinsons one hold my attention and you can do a video for whatever you want to work on. You can do them at home, you need little in the way of equipment and even if not your cup of tea, I think they are worth a look.
Tot
Laura
I am sorry that I am going to give you another take on this. I have seen nothing. no drug or therapy where there is universal agreement that it willl slow progression. However it is likely that there are drugs and therapies that can help. Exercise even if doesn’t stop/slow progression it wlll help. Maintaining strength, balance, fitness is worthwhile in itself.It may also build new neural pathways and improve the brains ability to cope with Parkinson’s. Positivity also seems beneficial.
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I don’t think JonB13’s take on the benefits of exercise is significantly different to mine (though we might disagree about the supposed benefits of positivity).
Its quite common in applied sciences like medicine that there is not universal agreement that an intervention or treatment helps. That makes evaluating the evidence difficult because you have to weigh up multiple probabilities (so not ‘it does/doesn’t work’, but ‘in study x 68% improved, whereas in study y it was 75%’). And that in turn means you need a good grounding in the topic itself, as well as familiarity with research methods, to come to an informed opinion.
I don’t have a grounding in research on PD and exercise which is why I hedged my original post. But what JonB13 says is my opinion too: exercise will likely help, and in a number of ways.
I formed my opinion by going to Google Scholar and searching for "meta-analysis systematic review exercise Parkinson’s, then studying the papers that came up.
I didn’t find any studies in the first 3 pages of hits that showed exercise having negative effects; results were all positive or inconclusive. However, where results were positive the effect was not always strong; the evidence was not always high quality; and long-term follow-ups were sometimes missing. So there are weaknesses and gaps in the evidence (including criticisms of the meta-analysis method itself) and therefore no universal agreement.
There are other considerations too. Exercise interventions align all-too neatly with the political push to make individuals responsible for their own health and to further cut back state support. Right now, for example, the UK government is underfunding the NHS and devolving to Trusts the difficult decisions about what to cut in order to stay within these reduced budgets. Also we do have to recognise that exercise simply isn’t available to everyone. Some people have cramped or crowded living spaces that make it very difficult, perhaps effectively impossible, to do suitable exercise. And some people have other physical disabilities in addition to their PD, which can make exercise too difficult or painful.
With those caveats, my reading of the evidence is that if you’re able to exercise the odd are reasonably high that you will get some benefit.
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Hi Laura, my hubby has had PD for 24 years. Imo, Exercise, exercise, exercise! I have no doubt it has slowed the disease for him.